Urticaria Pigmentosa

Alright, a while back I posted that Abrianna had pimplish bumps on her arms, legs, body, and butt that weren't going away. Well the antibiotic didn't do anything and the dr came up with it being Urticaria Pigmentosa and was setting up a dermatologist appointment for us. They have been around about 2 months. They said that appointments are running like 1-2 months out and we might not have one till Feb. They ped just called and said that they had a cancellation there and wanted to see if we wanted the appointment for TOMORROW! So, there are two ways to look at it. Either it is just good timing or they think it is more serious and got us in at the first cancellation.

Anyone hear of this? I've done the research and it doesn't seem that bad. So maybe it's something else or could be something else. I am trying not to get myself worked up but wouldn't there be a waiting list of people who need to be seen sooner who set their appointments up already?

I can't tell my sister or Matt (dh) that I am worried because they are the type to get all worked up. When I first got out of the ped. and called my sister saying it was Urticaria Pigmentosa and that was an immune system thing (alright, I goofed and called it auto-immune). I was worried and venting to her. Well, she took the day off to Christmas shop without the kids and my BIL said she was called him balling in the middle of the store! Ooops.

So, even if you don't know what the heck these pimples are, give me something to read! (sorry for all who are in the FB group too, I pretty much wrote the same thing over there. I just feel closer to everyone here then the huge group. Which if you are on FB and not in the group just let me know, it's an open group everyone can join).

Alright, a while back I posted that Abrianna had pimplish bumps on her arms, legs, body, and butt that weren't going away. Well the antibiotic didn't do anything and the dr came up with it being Urticaria Pigmentosa and was setting up a dermatologist appointment for us. They have been around about 2 months. They said that appointments are running like 1-2 months out and we might not have one till Feb. They ped just called and said that they had a cancellation there and wanted to see if we wanted the appointment for TOMORROW! So, there are two ways to look at it. Either it is just good timing or they think it is more serious and got us in at the first cancellation.

Anyone hear of this? I've done the research and it doesn't seem that bad. So maybe it's something else or could be something else. I am trying not to get myself worked up but wouldn't there be a waiting list of people who need to be seen sooner who set their appointments up already?

I can't tell my sister or Matt (dh) that I am worried because they are the type to get all worked up. When I first got out of the ped. and called my sister saying it was Urticaria Pigmentosa and that was an immune system thing (alright, I goofed and called it auto-immune). I was worried and venting to her. Well, she took the day off to Christmas shop without the kids and my BIL said she was called him balling in the middle of the store! Ooops.

So, even if you don't know what the heck these pimples are, give me something to read! (sorry for all who are in the FB group too, I pretty much wrote the same thing over there. I just feel closer to everyone here then the huge group. Which if you are on FB and not in the group just let me know, it's an open group everyone can join).

Thanks for replying! I read all about what the dr thinks it is and if it's that, I'm not too worried. I mean, I would much rather her not have it but it's not that horrible. I did realize, what if I would of been busy, they have to say that they are calling you because they are concerned, right? I mean, if they are concerned and I had plans, I would of changed them! But they just said they had an opening, so, it has to be just that? Right? I like to over think things. I am still a little worried but that's cause it's all to do with the immune system. So, I am really glad to get this out of the way and hear what it is!

At least it's tomorrow and not next week. Then I could drive myself nuts with the thoughts in my head! I go from pimples to losing her pretty quick! It's just a total fear of mine from the day I started trying for kids till the day I die, that will always be my fear! I just can't imagine having a child be terminally sick. Like I said, my mind goes to the extreme. Luckily I am not like my sister who would then worry herself to death until the appointment. I just have quick moments and go back to not worrying, lol.

DH should be able to go with me, so that's good. Not only do I suck at passing on info, 2 kids to 1 does not make listening to the dr easy!

Thanks for replying! I read all about what the dr thinks it is and if it's that, I'm not too worried. I mean, I would much rather her not have it but it's not that horrible. I did realize, what if I would of been busy, they have to say that they are calling you because they are concerned, right? I mean, if they are concerned and I had plans, I would of changed them! But they just said they had an opening, so, it has to be just that? Right? I like to over think things. I am still a little worried but that's cause it's all to do with the immune system. So, I am really glad to get this out of the way and hear what it is!

At least it's tomorrow and not next week. Then I could drive myself nuts with the thoughts in my head! I go from pimples to losing her pretty quick! It's just a total fear of mine from the day I started trying for kids till the day I die, that will always be my fear! I just can't imagine having a child be terminally sick. Like I said, my mind goes to the extreme. Luckily I am not like my sister who would then worry herself to death until the appointment. I just have quick moments and go back to not worrying, lol.

DH should be able to go with me, so that's good. Not only do I suck at passing on info, 2 kids to 1 does not make listening to the dr easy!

I think they would most definitely tell you if they were concerned! I will have to read about it in a little bit. I thought that my son had diabetes for a while. I know it isn't the worst thing in the world but I still worried. It didn't help that the lab lost the results for 2 weeks and we had gone out of town! But he was fine, still.... I worried.

It's normal to worry for me and I always think of worst case scenarios. Then, I run to google and it makes everything twice as bad!

And yes, they are 14 months apart. I like it most of the times. I live 32 hours away from all my friends/family and my husband has a job that requires him to be gone a lot. He is across the country for 2 weeks right now. I struggle sometimes but I still like it. It's just hard when I have something important (Dr. appointment) and I have to take both of them. Right now, I wish they were a little further apart because it's hard carrying them to/from the car in all this snow! Sometimes Jackson will walk, but he usually just takes off for the park (we live right across the street).

I think they would most definitely tell you if they were concerned! I will have to read about it in a little bit. I thought that my son had diabetes for a while. I know it isn't the worst thing in the world but I still worried. It didn't help that the lab lost the results for 2 weeks and we had gone out of town! But he was fine, still.... I worried.

It's normal to worry for me and I always think of worst case scenarios. Then, I run to google and it makes everything twice as bad!

And yes, they are 14 months apart. I like it most of the times. I live 32 hours away from all my friends/family and my husband has a job that requires him to be gone a lot. He is across the country for 2 weeks right now. I struggle sometimes but I still like it. It's just hard when I have something important (Dr. appointment) and I have to take both of them. Right now, I wish they were a little further apart because it's hard carrying them to/from the car in all this snow! Sometimes Jackson will walk, but he usually just takes off for the park (we live right across the street).

Oh man, I can't imagine being that far away! I mean, for the day to day life I'm in the same boat. Family and friends are 4 hours away. So, unless Matt takes off work I have the kids. He goes out of town but never really that long. That would be hard. I do remember the phase where I was haulling both kids looking like a crazy person, looking like I would drop one at any minute. Never did, lol.

It'll get easier! As so as Caralee (if the tracker is right:) starts walking life gets better. I first was happy at 4 months and then it was sitting and then walking. Now I am happy. Well, they fight over like everything. What one has the other wants but I guess I'll be dealing with that till they move out.

I gotta tell you, you must be one strong mom to go all that time on your own! Not too far from where you're at was the first time my two played together. Jeremy chased Abrianna into her room. They closed the door and were laughing together. I almost cried standing outside the door listening to them play together. It was like I had been waiting for that moment the whole time.

Oh, the diabetes would scare me too. Jeremy's blood work at the hospital was messed up and they thought he had it at birth. I didn't know until it was cleared up, my mom and DH kept it from me. Then we had to get the blood work redone later because they messed it up again. That sucks that you were out of town and worrying. That makes it so tough. Glad it came back clear.

Oh man, I can't imagine being that far away! I mean, for the day to day life I'm in the same boat. Family and friends are 4 hours away. So, unless Matt takes off work I have the kids. He goes out of town but never really that long. That would be hard. I do remember the phase where I was haulling both kids looking like a crazy person, looking like I would drop one at any minute. Never did, lol.

It'll get easier! As so as Caralee (if the tracker is right:) starts walking life gets better. I first was happy at 4 months and then it was sitting and then walking. Now I am happy. Well, they fight over like everything. What one has the other wants but I guess I'll be dealing with that till they move out.

I gotta tell you, you must be one strong mom to go all that time on your own! Not too far from where you're at was the first time my two played together. Jeremy chased Abrianna into her room. They closed the door and were laughing together. I almost cried standing outside the door listening to them play together. It was like I had been waiting for that moment the whole time.

Oh, the diabetes would scare me too. Jeremy's blood work at the hospital was messed up and they thought he had it at birth. I didn't know until it was cleared up, my mom and DH kept it from me. Then we had to get the blood work redone later because they messed it up again. That sucks that you were out of town and worrying. That makes it so tough. Glad it came back clear.

So I guess the derm thinks it is bug bites. I don't know if I believe it or not. I just don't understand how she is getting them, why they are not on her face, hands or feet, and why they are not going away. He put us on another ointment, basically just a stronger one and we have another appointment in a month since they won't be gone by them.

I did have the option to do a biopsy today but that will leave her with 2 stitches and a scar! So, how to I say, even though you think it is pointless, let's do it anyway? Let's torture my child to no end and leave her in pain and with a scar. I really wish I did though! Abrianna was not liking this place at all!

So, no real answers but the guess is, bug bites. There you go.

So I guess the derm thinks it is bug bites. I don't know if I believe it or not. I just don't understand how she is getting them, why they are not on her face, hands or feet, and why they are not going away. He put us on another ointment, basically just a stronger one and we have another appointment in a month since they won't be gone by them.

I did have the option to do a biopsy today but that will leave her with 2 stitches and a scar! So, how to I say, even though you think it is pointless, let's do it anyway? Let's torture my child to no end and leave her in pain and with a scar. I really wish I did though! Abrianna was not liking this place at all!

Okay, so sorry not to get with you on here. Bug bites was really all the dr could come up with? What kind of bugs? I would be just like you and not really sure I could just be okay with that diagnosis. But I'm sure Abrianna is fine. If it was more serious she would be letting you know somehow. Hopefully they go away soon.

Okay, so sorry not to get with you on here. Bug bites was really all the dr could come up with? What kind of bugs? I would be just like you and not really sure I could just be okay with that diagnosis. But I'm sure Abrianna is fine. If it was more serious she would be letting you know somehow. Hopefully they go away soon.

Thanks for the reply. My Pedi totally disagreed too! We went and saw her for the "well" child checkup and she still doesn't see how it could be bugs but at least she told us it isn't any mites (bed bugs) and nothing she has ever seen. She told us what to do "if" it was bugs and said that she's going to call the office and voice her opinion and concern about his dr. She said this was the second time she totally didn't like what he had to say and he's new and what not (23 yrs old or something like that). Not that age matters but he was very quick to say he was right and it is nothing else. Told me (I forget if I wrote this) if I want to "torture my child for my piece of mind" he would do the biopsy. I was totally going to say let's just do it (not that I was or am totally worried) but then he said 2 stitched and a scar and how do I do that when I know nothing. I'm going to give her a scar because "I" disagree with the guy who just spent all those years in school?

Anyway, we randomly decided to stop giving her her daily meds (yep, back to thinking I'm smarter than the drs) and they seem to be going away. I asked if it was her meds from the beginning, after assuming it was part of the eczema cycle and they said it wouldn't show up with late in the game but we weren't doing things daily until not long ago. So, we aren't giving her zyertec or singular since Thrusday or Friday! They seem to be going down too and I don't think new ones are coming up. I am really hoping I solved the case, lol. I would love it to be meds. That means it's nothing wrong with her. Now, it could also be it's just done running it's coarse if it's a viral infection or whatever or her body is just done fighting itself but at least I have something. I can start introducing the meds again once they go away and see if they come back. Then we'll know for sure.

She doesn't seem to be coughing and isn't all stuffy, so maybe she doesn't have winter allergies, lol. Here's hoping, singular is really expensive even with our insurance!

We are also going out of town for a week plus, so we'll treat her room (pedi said they pretty much have to be in bed they way they are showing up). She said to wash sheets on hot every other day, air tight bag her stuffed animals for 1 week, vaccuum the heck out of her room, and so forth. So, we'll try and do that before we leave just to say we did.

It's just so annoying to not have an answer and have a guy say the things he did! Can't wait for them to be gone!!

Thanks for the reply. My Pedi totally disagreed too! We went and saw her for the "well" child checkup and she still doesn't see how it could be bugs but at least she told us it isn't any mites (bed bugs) and nothing she has ever seen. She told us what to do "if" it was bugs and said that she's going to call the office and voice her opinion and concern about his dr. She said this was the second time she totally didn't like what he had to say and he's new and what not (23 yrs old or something like that). Not that age matters but he was very quick to say he was right and it is nothing else. Told me (I forget if I wrote this) if I want to "torture my child for my piece of mind" he would do the biopsy. I was totally going to say let's just do it (not that I was or am totally worried) but then he said 2 stitched and a scar and how do I do that when I know nothing. I'm going to give her a scar because "I" disagree with the guy who just spent all those years in school?

Anyway, we randomly decided to stop giving her her daily meds (yep, back to thinking I'm smarter than the drs) and they seem to be going away. I asked if it was her meds from the beginning, after assuming it was part of the eczema cycle and they said it wouldn't show up with late in the game but we weren't doing things daily until not long ago. So, we aren't giving her zyertec or singular since Thrusday or Friday! They seem to be going down too and I don't think new ones are coming up. I am really hoping I solved the case, lol. I would love it to be meds. That means it's nothing wrong with her. Now, it could also be it's just done running it's coarse if it's a viral infection or whatever or her body is just done fighting itself but at least I have something. I can start introducing the meds again once they go away and see if they come back. Then we'll know for sure.

She doesn't seem to be coughing and isn't all stuffy, so maybe she doesn't have winter allergies, lol. Here's hoping, singular is really expensive even with our insurance!

We are also going out of town for a week plus, so we'll treat her room (pedi said they pretty much have to be in bed they way they are showing up). She said to wash sheets on hot every other day, air tight bag her stuffed animals for 1 week, vaccuum the heck out of her room, and so forth. So, we'll try and do that before we leave just to say we did.

It's just so annoying to not have an answer and have a guy say the things he did! Can't wait for them to be gone!!

Our first ENT was like that. He was an older doctor and actually worked for VA. When our pedi looked at one of Miles' tubes and his ear was so infected she said there was no way the tube was placed correctly, but he of course said it was and said that the infection just pushed it out of place. So, needless to say we went to a different ENT and he replaced that tube because it was placed incorrectly.

I understand about the Singulair. Miles does Singulair, Claritin (which I may switch to Zyrtec), and 2 inhalers. He got to where he wouldn't eat the applesauce with the Singulair in there so I just quit giving it to him and thought he didn't sound any different but then he started coughing at night so when I took him the pedi told me he was coughing because of not taking it so she gave us the chewable tablets. I haven't had it filled yet, and dread it. It was like $35 with insurance for the granules, so I'm sure the tablets will be the same. Hopefully her bumps just go away and never come back.

Our first ENT was like that. He was an older doctor and actually worked for VA. When our pedi looked at one of Miles' tubes and his ear was so infected she said there was no way the tube was placed correctly, but he of course said it was and said that the infection just pushed it out of place. So, needless to say we went to a different ENT and he replaced that tube because it was placed incorrectly.

I understand about the Singulair. Miles does Singulair, Claritin (which I may switch to Zyrtec), and 2 inhalers. He got to where he wouldn't eat the applesauce with the Singulair in there so I just quit giving it to him and thought he didn't sound any different but then he started coughing at night so when I took him the pedi told me he was coughing because of not taking it so she gave us the chewable tablets. I haven't had it filled yet, and dread it. It was like $35 with insurance for the granules, so I'm sure the tablets will be the same. Hopefully her bumps just go away and never come back.

That SUCKS about the ENT! When going to a specialist, you should have to worry about that. The pedi should not know more about things that this dr only deals with. That's the whole stinken point. That is so sad and a little scary! I mean, what if you didn't trust your pedi and went with what that guy said? That could have been horrible for Miles. I'll tell you, bugs though are still so in miy mind. Every little itch I have I think we have bugs and last night I actually got a little bump and it only itched just at first. Now I have a little bump. Not totally like hers at all but she has issuse and might react different. But why do they start getting better and then go crazy? Bugs sleep for a few nights in a row, lol. Beats the heck out of me. I just wish he had a more open mind.

For us, the chewables are $65 per month!! BUT our prescription insurance isn't that great unless it's generic. If it came in generic, we'd only pay $5! Ahhhh. Matt looked into it and singular won't go generic for a while. I forget when. Our dr has given us some free weeks and stuff and we weren't everyday for a while. Abrianna was coughing at night when taking the singular the dr said we might need to switch if it keeps up more than once a week. Since, she's been off really hasn't coughed much. The one day she did we gave her an inhaler treatment and it stopped. Don't know if she was just done coughing or if the inhaler worked but if I could keep her off this it would be great. At least long enough to get rid of the bumps totally. Then, if we go back on them, we'll know for sure.

Now, we get to go stay at my parents (well, dad's) for a week and some days from Christmas eve or the night before till after new year! The reason that is bad is because my dad and brother smoke. My dad just smokes by the fireplace with a fan blowing out the smoke and my brother only smokes in the basement but it doesn't matter, we still come home with smoke on our clothes so it's going in her lungs. But we do the inhaler more often just to be safe. Luckily, health wise, she seems fine.

Interesting how the coughing at night is a routine part of all this! Well, all my craziness started 1/1/10. So maybe 2011 will be the year of no random minor health issues! I know all my little things are not much to complain about. They are not serious just annoying and one after another between my sister and I. It's like I went 2 years with no problems and then was bombarded! So, maybe 2011 will be better for all, lol.

That SUCKS about the ENT! When going to a specialist, you should have to worry about that. The pedi should not know more about things that this dr only deals with. That's the whole stinken point. That is so sad and a little scary! I mean, what if you didn't trust your pedi and went with what that guy said? That could have been horrible for Miles. I'll tell you, bugs though are still so in miy mind. Every little itch I have I think we have bugs and last night I actually got a little bump and it only itched just at first. Now I have a little bump. Not totally like hers at all but she has issuse and might react different. But why do they start getting better and then go crazy? Bugs sleep for a few nights in a row, lol. Beats the heck out of me. I just wish he had a more open mind.

For us, the chewables are $65 per month!! BUT our prescription insurance isn't that great unless it's generic. If it came in generic, we'd only pay $5! Ahhhh. Matt looked into it and singular won't go generic for a while. I forget when. Our dr has given us some free weeks and stuff and we weren't everyday for a while. Abrianna was coughing at night when taking the singular the dr said we might need to switch if it keeps up more than once a week. Since, she's been off really hasn't coughed much. The one day she did we gave her an inhaler treatment and it stopped. Don't know if she was just done coughing or if the inhaler worked but if I could keep her off this it would be great. At least long enough to get rid of the bumps totally. Then, if we go back on them, we'll know for sure.

Now, we get to go stay at my parents (well, dad's) for a week and some days from Christmas eve or the night before till after new year! The reason that is bad is because my dad and brother smoke. My dad just smokes by the fireplace with a fan blowing out the smoke and my brother only smokes in the basement but it doesn't matter, we still come home with smoke on our clothes so it's going in her lungs. But we do the inhaler more often just to be safe. Luckily, health wise, she seems fine.

Interesting how the coughing at night is a routine part of all this! Well, all my craziness started 1/1/10. So maybe 2011 will be the year of no random minor health issues! I know all my little things are not much to complain about. They are not serious just annoying and one after another between my sister and I. It's like I went 2 years with no problems and then was bombarded! So, maybe 2011 will be better for all, lol.

Oh no about the Singulair. I was wondering how bad it will be. My insurance is pretty good though so hopefully it will cover most of it. The smoke is always hard on Miles. Hopefully she'll do good through the holidays though and will be all better!

Oh no about the Singulair. I was wondering how bad it will be. My insurance is pretty good though so hopefully it will cover most of it. The smoke is always hard on Miles. Hopefully she'll do good through the holidays though and will be all better!

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